Organ Donation Week

This week has been National Organ Donation Week here in the UK, so a special week to promote awareness of Organ Donation.

I’ve been deeply affected by transplant and organ donation now for over nine years and it’s a cause dear to my heart.

On Monday I was asked to do an interview with Heart FM radio for the South East. It was good to help and they played clips from my interview throughout the afternoon, so hopefully many people may have heard it and it may make a small difference.

It’s nearly time for the anniversary of my transplant and each year I think of all the wonderful things in my life that organ donation has given me.

This year’s highlight has to be the birth of our granddaughter, little Darcy. I wasn’t ever supposed to see her, but yet thanks to my donor, I’ve shared so many special moments with her already and she’s only 5 months old.

I’ve also been able to see my gorgeous grandson Freddie grow from a baby, watching all his first steps to toddlerhood. This year I’ve spent so much time with him and he chats away, his speech growing daily. We have so many lovely conversations together and make up our own games to play. Being a grandma is a wonderful thing and feels so special and such a privilege in my position.

We’ve managed a few breaks away to Norfolk and the Lake District with the family, which has felt so special too and given us many special and priceless moments to share. We don’t travel abroad any more, due to my health, but we continue to enjoy visiting the places we love and exploring all that’s around us. Sometimes we forget the beauty that’s right under our noses and don’t see it. I still feel appreciative of all that’s there to see and do, from simple things like watching the birds, seeing the flowers growing in the garden and just having a simple cup of coffee thanks to my donor.

Rob and I are still involved with our Transplant Support Group at Papworth, helping to support other transplant patients and working on projects with the transplant team. This will always be a cause dear to our hearts and feels important to us. Our hospital has moved premises this year, which has been a big upheaval and a time of uncertainty, but we are pleased that we now have a wonderful, brand new and state of the art hospital for my continuing care and that of other fellow patients.

I’ve also been enjoying a period of steady health after having had the pneumonia, sepsis and blood clot earlier in spring. Luckily my local hospital moved so swiftly and I’ve been able to make a good recovery with the help of oxygen.

Ted, our cocker spaniel, is also a big part of our lives. He will be nearly four soon, we feel like we’ve always had him and he just slots into our family life. He often comes with us on holidays and days out and just adores the grandchildren. Sarah and Oli have a new cocker spaniel puppy, Finn. He’s such a character and a live wire, but quickly becoming another established member of the family.

Thanks to Organ Donation we are living a pretty normal family life and appreciating all the good things. We’re busy with projects such as decorating and the garden too, just normal family stuff, but that is what organ donation is all about, just to enable us to have a normal and fulfilled life.

I’m still working on my next book too. If things had gone to plan, it should have been finished by now, but all my serious health issues of the last few years halted things and actually changed the course of how this story was going. I’m still working hard on it and have a first draft manuscript to work on now and I’m so pleased I’ve reached this stage.

However, I want to do a serious overhaul of this draft, as my situation health wise changed dramatically from my original plans and ideas and as it’s another memoir, I want to reflect the true essence of all that’s happened so my new book may help others in similar situations with declining health. So watch this space, it’s still a work in progress, but again I feel privileged I’m in a position to be writing and doing something I love.

Organ Donation is the greatest gift and it not only benefits the recipient, but the benefits ripples out amongst the recipient’s family, friends and community. There is no price you can put on it.

The law will be changing on organ donation from an ‘opt in’ system to an ‘opt out’ one. It doesn’t really matter which system is in place, it will be family who have to say ‘yes’ or ‘no’ if you were to be in the unfortunate position to donate your organs, so it’s most important to let your family know your wishes whatever way you feel about organ donation.

All I can say is that Organ Donation is the most wonderful thing and that me and my family are forever grateful to my donor and their wonderful family who said ‘yes’ at the most difficult time in their lives.

Thanks so much for reading 😄

Spring Time

Last week we had the spring equinox on the 20th March, marking the astronomical start of spring and the days becoming longer than the nights from now on. The signs of spring are all around us with new buds, blossoms and shoots on the trees and all around the garden. The daffodils are beginning to bloom, which usually signals that springtime has definitely arrived.

The weather seems to be confusing us though, giving us the odd day of warm sunshine and a promise of spring in the air, only to knock our hopes back with strong Siberian winds, cold and snow.

I’ve been trying to do plenty of enjoyable things since the stress of the last few weeks with the cancelled operations. We’ve enjoyed a few meals out and I’ve enjoyed cooking lots of my favourite recipes. Eating and drinking at the moment is giving me lots of pleasure for a few reasons.

For months and months up until recently I’ve been battling infections and having to have various concoctions of antibiotics and drugs, and this combined with a few bouts of norovirus had resulted in me losing my appetite and only being able to tolerate very plain and simple foods. With all this I’ve also lost so much weight, my clothes have actually started falling off me and I’ve had to start altering many of them to fit me.

Recently, I’ve been feeling so much better, managing to exercise more and with big reductions in my immunosuppression drugs and a good few weeks now of no infections, my appetite has come back and I suddenly seem to be able to tolerate eating normally again. That feels wonderful after months of eating so frugally.

Obviously, if my stomach fundoplication operation had gone ahead, it would have affected my diet for a while again and at this point I would probably still only be able to eat pureed and semi-solid food. At the moment something as simple as eating and drinking feels pretty special and with it comes the guilty pleasure of having been given some respite from the liquid and pureed diet that I hadn’t been looking forward to very much.

We’ve also enjoyed a few visits to the theatre and days out when the sun has been shining. On a visit to one of our favourite places, Wrest Park, we actually managed to have lunch sitting outside, it was so mild and spring like.

I had a full clinic review at Papworth last week too and had the great news that my lung function has improved. It’s the best it has been for eighteen months. I was absolutely delighted about this and it’s inspired me to keep on pushing my exercise regime and strive to improve my lungs even more.

I’ve a new date for my surgery now and UCLH have been taking my complaint very seriously and have spoken to me on several occasions to both apologise for the mistakes that have been made and to assure me that procedures are in place to avoid the same happening to other patients in future.

I’ve had hospital every week for the last six weeks, but now have some respite until May when my surgery is planned to take place. It feels like a more relaxed time now. Time to enjoy Easter and special time with family and friends and generally make the most of a good run of health. I now have a good few weeks to try and build on becoming even fitter and fitter in readiness for the surgery.

Hopefully better weather will be on its way too, enabling us all to venture out more and enjoy this special time of year.

Have a happy Easter everyone!

In the meantime here’s a few spring photographs (some from Wrest Park) to enjoy…

Fundoplication Fiasco

I thought I’d be in hospital again this last weekend, as I was rescheduled to have my stomach fundoplication operation last Friday. This was following it being cancelled the previous week at the last minute just before I went down to theatre. The whole incident had felt very stressful, especially with the added stress of struggling on public transport to get to London and back in the heavy blizzards, snow and freezing temperatures. The whole incident had taken some ‘coming down’ from.

All settled in the hotel

I was contacted the day afterwards though, with many apologies and a promise of now being a ‘top priority’ and that I would be scheduled to be ‘first on’ for my next appointment. I therefore agreed to a new date of Friday for the operation to go ahead again and all the papers were sent out to me confirming it. In some ways I had reservations, as I needed to start the mental and emotional build up all over again, so soon after the big ‘come down’. It’s an operation I know I need, but don’t particularly feel very enthusiastic about.

After all the years of procedures and operations on my heart and lungs, I do feel reluctant about having other parts of me operated on. I worry it will cause more things to be monitored, more clinics and doctors to be under, more things to possibly go wrong.

It might seem that I’m ungrateful to feel like this, but I’ve had a difficult run over the last eighteen months with my lungs and I’m voluntarily going to put myself out of action for a while yet again when I’ve only just got back on my feet.

There also comes some high risks with this whole procedure being an immunosuppressed patient, a heart and lung transplant patient and a patient with poorly functioning lungs, so I’m actually quite frightened about this and quite scared of ending up in a worse state than before.

A risk of chest infection is high due to ventilation during the process. The thought of going through something like the pneumonia again, that I experienced last spring and that damaged my lungs is terrifying. There aren’t any guarantees, but the plan is that I will be looked after in intensive care and all the risks will be of high consideration throughout.

An early Mother’s Day Celebration

So why am I putting myself through all this? My lungs are struggling to work properly now, they have less than 50% capacity. There are several problems including damage from rejection, pseudonomas, damage from infection and damage from stomach acid. Lung transplant patients often suffer from the stomach problem due to the actual transplant operation and new organs displacing the stomach and the continual use of necessary steroid medication damaging the sphincter muscle. If the problem is left uncorrected then in time the lungs will continue to be damaged and reject.

All three of my transplant consultants are in agreement that the operation will help prevent this happening and basically if I don’t have it done then my lungs will continue to decline in function and reject again. This operation is therefore a needs must despite all my reservations.

Hospital view from hotel

So off we went back to London for the fourth attempt at this operation, it had had to be cancelled a couple of times previously due to my ill health too. The weather was mild and dry so we had no extra stress and hazards with the travelling like last week. We travelled down the day before the planned operation, as it was the usual 7am and ‘nil by mouth’ start on the Friday morning.

It was Mother’s Day weekend coming up and knowing I was going to be in hospital and unwell on Mother’s Day, we met up with Rose and David and had a nice dinner to celebrate early. This felt extra special, despite the impending operation the following morning, as I’d spent Mother’s Day in hospital last year. At least this year we’d had chance to organise and celebrate. We’d had to put off any celebrations with Sarah, Oli and Freddie though, because they’d all had bad colds and viruses and I hadn’t been able to see them for nearly a month or so because of the risks being immunosuppressed.

Deja vu, 7am again at UCLH

7am on Friday morning and I turned up ‘nil by mouth’ for my surgery only to find out that I wasn’t even on the surgical list for that day. I was asked to sit and wait in case the surgery might be going ahead. We waited, waited, waited, waited…

Basically no-one did anything about it, there was no-one available to see us and no-one to explain what was happening or what had happened. After we kept on chasing the receptionist, who did her best to contact the relevant people, hours later I was eventually phoned by someone from the admissions department and advised it was all my own fault and I shouldn’t have ever turned up for the appointment as it still needed to be confirmed. I think I saw red at this point, as I was sitting there holding on to all the ‘confirmation’ paperwork!

Rob took the phone and eventually the person admitted they had copies of the ‘confirming’ letters on screen and that it had all been a mistake that they’d been sent out to me. So that was that, another cancellation, another load of stress and expense of hotels and travel for nothing and to add to it all not even an apology or any proper explanation from anyone! We were advised to speak to the hospital PALS  office, which we did on leaving. We have formally complained as the whole incident, compounded with the cancelled operation the week before has left us stressed, angry and upset. We shall see what the outcome is and how they can explain what happened.

In the meantime, I have received a new date for yet another attempt at the surgery – attempt number five. Watch this space…

As the saying goes though, ‘every cloud has a silver lining’ and I was able to enjoy a lovely Mother’s Day weekend after all, spending loads of time with Sarah and Freddie and still being able to eat and drink normally and feeling well. A huge improvement on last year’s Mother’s Day when I was poorly in hospital and much more than I had expected for last weekend. Now I’ve time to take stock, enjoy and make the most of life for a few weeks before we try yet again.

Mother’s Day flowers

February Brings The Snow

‘February brings the snow and makes our feet and fingers glow’

February ended with a bang as the ‘Beast from the East’, as it’s now been coined, took the country in its icy grip and we experienced a week of heavy snow and freezing temperatures. I thought I’d escaped those days of snow disruption now I don’t work any more and shouldn’t need to go out in it, but no I seem to keep getting caught out with snow and hospitals lately.

Back in December I found myself caught up in heavy snow when I was blue lighted to hospital with a respiratory infection and this week I found myself asking again, ‘What is it with me and snow and hospitals?’

7am at UCLH

I had a planned hospital stay for a stomach fundoplication operation, which is a preventative operation to help stop my lungs being damaged and going into more rejection. The operation has been cancelled twice already, because I was deemed too unfit to go ahead with it during the autumn. Suddenly, though, after a quick referral recently it was all back on and happening again.

 

Waiting room view

Having serious surgery with a general anaesetic is always a stress for the healthiest of people. Although I was thoroughly committed to this all going ahead whilst I was reasonably healthy, I still had worries and concerns about all the risks that had been explained to me, especially the extra concerns with my poor functioning lungs and the fact they are transplanted together with my heart.

View outside King’s Cross Station

The surgeon and anaesthetist were all prepared though and provision had been made for me to be looked after in intensive care due to the high risks involved. I was comfortable with this – well as comfortable as I could ever be. There were extra factors to consider too: UCLH hospital is situtated in central London and has no car park. It’s a bit of a hassle with my breathing difficulties commuting in and out by train, so we decided to book an overnight stay in a hotel nearby the hospital so I could manage the process in stages with the 7am start required. We were unsure how long I’d be in hospital, but planned we’d have to get a cab to get me home, as I would be contending with not only the breathing difficulties, but the after effects of having surgery and consequences of this particular surgery.

Approaching Knebworth on the train
Back home in the garden

Then came the news of the ‘Beast from the East’ and this started to stress me more than the surgery and its risks. The forecast looked dire for the end of the week and early weekend – when I should have been  being discharged from hospital and probably in a very fragile state. Because of my lungs, I’m already labelled as one of those ‘high risk’ patients in severe weather.  All I could think of was being stranded in snow. We’d had to put Ted in kennels too and although he’s used to kennels, I wasn’t entirely happy about this with the freezing temperatures.

I still felt I needed to go ahead with it though, so because of the weather we set off into London a little earlier than planned and made it to the hotel with no problems. The following morning all went to plan and we arrived at the hospital in good time at 7am. I was ‘nil by mouth’ from midnight and it had snowed overnight again and it felt perishing cold.

Not being able to have anything warm to eat or drink, made it feel even colder and the hospital has huge glass windows everywhere, so it was freezing in the waiting room and draughty corridors too. Everyone was sat with their big coats and snow gear on. It began to blizzard with snow outside and continued all morning as we all watched from the window and waited to be called.

I saw the various medical staff that needed to see me and was all prepped ready for the operation, which was planned for midday. Early on in the morning though, my surgeon had  advised that my operation would only be able to go ahead if there was an intensive care bed available.

I knew when I’d been told this and actually sitting there watching the severe weather, that there was a strong possibility this would happen. Time went on though and all the signs seemed to indicate that things would go ahead.

Then my name was called and I stood up expectantly, all ready to go down to theatre, but soon realised from the expression on the surgeon’s face that it was all going to be cancelled. They weren’t prepared to undertake it without an intensive care bed being available and there had been too many emergencies already that morning and no bed was available.

 

In some ways I was disappointed, as it had been a big effort and expense to manage to get there in the artic conditions, but somehow inside me I felt this huge relief too, as I could just get home to safety and comfort hopefully before the worst of the weather set in for the week.

I realised how much the weather had been stressing and troubling me. Not difficult when I was probably already stressed about having an operation I didn’t particular want to have, but is a needs must and with the dire weather news and forecasts being broadcast on TV continually.

A little peek of spring with a Tete a Tete in bloom

So with some very mixed feelings after such a huge build up and still heavy snow falling, we decided to try and head back home while the traffic was still moving and trains still running. That wasn’t before warming up, after being ‘nil by mouth’ for a long time, with some hot food and drinks just in case the going got tough en route home.

Where are the bluebell shoots?

Now I’m home again, I’m just pleased to be safe and warm. I don’t feel annoyed or distressed about the operation being cancelled. These things happen and someone in greater need than me has been helped. I know that when I had my transplant operation, which went on for over 10 hours during the day time, that numerous routine operations might have been cancelled while my life was being saved.

My operation has now been rearranged already. In a way I’ve had a dry run and know more what to expect and I will be able to focus on the operation itself now, rather than worrying about issues like the weather.

One thing stood out very starkly during our London visit and that was the plight of the homeless. The weather conditions were extreme and we saw many homeless people taking refuge in the corridors and restaurant of the hospital. It made me count my blessings and humbled me.

Whatever the situation there’s always so much to be thankful for – a bit of snow and a cancelled operation when you have a home to go to and a supportive and loving family to take refuge with, isn’t anything at all compared to what the homeless face in this freezing cold weather.

Palm tree has a whole new look!

So operation attempt number four will be happening soon; we’ll see what happens; whatever will be, will be; it will all be sorted somehow with snow or no snow.

In the meantime goodbye to a very snowy freezing February and watch this space for the ongoing hospital saga…

Snow, Christmas Lights and Blue Lights

It all started with a snow day.

I always love the snow, especially now when I don’t work any more and don’t have to feel forced to drive in it or venture out. It was quite lovely to wake to heavy snowfall on a Sunday morning; it meant most people didn’t have to drive or go out unnecessarily and families could enjoy and have fun in snow properly together.

The garden was transformed to a sea of white and there’s nothing like treading in untouched snow, making those first footprints and tracks. The park and pathways behind us looked beautiful too. It was the weekend, early December and we were putting up our Christmas lights and decorations; everything felt Christmas perfect with the snowy backdrop.

I’d caught a cold over a week ago though and found I couldn’t breathe if I tried to venture out in it. I’d thought I’d been doing well and all was under control, but the cold left me gasping and I couldn’t catch my breath back when I started to lose it. I knew I had to stay indoors, keep warm and rest. I knew things were deteriorating though – that horrible feeling when you know with lungs that already don’t function at the best of times, that you are going to need some extra help.

I sought advice, doubled some medications and hoped I’d wake up to a better day. Monday morning and it was formally declared as a ‘snow day’. Roads were icy and dangerous and the snow and sleet were heavy. We phoned for an emergency doctor’s appointment, as things had become much worse. As I tried to get ready to go for this, my breathing was slipping and slipping downhill. Somehow Rob bundled me in the car, after having to spend half an hour digging it out of snow and clearing the drive.

We arrived at the doctor’s surgery and managed to park outside. I managed to climb out of the car, but the cold took my breath and Rob had to leave me clinging on a wall, while he retrieved the wheelchair from the car. Somehow he managed to put me in it and manoeuvre it through the snow and ice and we eventually arrived inside covered in drops of snow and sleet and dripping wet.

Then our wonderful NHS went into action.

Two doctors and the practice nurse helped me, I was put on oxygen and a nebuliser, then paramedics swiftly arrived and took over. From the sparkly Christmas lights and beautiful white snow of the day before, we went to blue lights and sirens as the ambulance ploughed through the slush and sleet of a grim grey day.  Like the staff at the doctor’s, they gave me first class care and were kind and reassuring.

The same again once I arrived at hospital, a team waiting for me and three people working on me straight away, as I was rushed in a side room – everyone kind and helpful as they worked. Then calm and relief as my breathing began to stabilise. Then I was taken to the respiratory ward, another side room and more wonderful care for eight days while they treated me and looked after me, liaised with my transplant team and left no stone unturned until they had me fully stable and well enough for home.

Then it was a visit to Papworth, my transplant centre, for more tests and checks, just to be sure everything was going in the right direction. Once again, more first class care, with back up over the holiday period and more checks for early new year planned.

Now I’m home and well enough to enjoy Christmas with my family and it’s all thanks to those numerous NHS staff who helped me with such expertise, care and total dedication to make me better.

I cannot thank them enough and all the kindness each and everyone one of them showed me while I went through what felt like a traumatic experience. Another ‘snow’ story on the family list – we have a few of them. They’re usually about being stuck in ‘snow’ traffic jams for hours on end, having to abandon cars and walk for miles to get home – that sort of thing. This one will be another to remember and smile about one day…

I’ve had so much care from the NHS this year and they’ve kept me bouncing back each time. I just want to say a massive thank you to everyone who works for the NHS to help us all stay well and healthy. Many of the NHS staff will be working hard and saving lives over Christmas, so here’s wishing that they manage to enjoy some peaceful and lovely time with their friends and families too during this festive period.

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Now it’s Christmas Eve and I’m so pleased and relieved to be home and feeling that all is much better again. I want to thank everyone who has followed my blogs this year and given me encouragement and support through all the ups and downs with my health.

Wishing you all a very Merry Christmas and a healthy and happy New Year.

 

 

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50 Years of Heart Transplantation

This week marked 50 whole years since the first heart transplant. As a heart and double lung transplant recipient, to me, this is a very poignant anniversary. Basically, I would not be alive and even writing this if it wasn’t for those people who were willing to push the boundaries of science and experiment with medical concepts which go beyond the pale.

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The very first heart transplant was carried out by Dr Christiaan Barnard, a surgeon at Groote Schur Hospital in Cape Town, South Africa. The recipient was Lois Washkansky, a patient terminally ill with heart failure. The donor, Denise Darvall, was a twenty five year old who suffered a fatal brain injury in a car crash. Her father, knowing she liked to help others, made the generous decision to donate her organs. I think all of us heart transplant recipients are thankful to these pioneering people, who were at the forefront of the whole process of heart transplantation.

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Heart transplantation has developed in leaps and bounds since then, with Sir Terence English performing the UK’s first successful heart transplant with long term success in 1979. This was due to the development of ciclospororin, an immunosuppressant that stops the body rejecting the heart.

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There are still challenges with heart transplantation. Firstly, the shortage of organ donors poses a problem. Fewer people die in circumstances where it is possible to donate organs due to advances in medicine and things such as improved car safety. Then, there is the fact that although patients are signed up to the organ donor register, families still refuse to give consent to an organ donation. This is usually because they didn’t know their loved one’s wishes.

Only 33% of the English population have signed up to the organ donor register with the ‘opt – in’ system currently used in England for organ donation. Whatever the system, ‘opt-in’ or the ‘opt-out’, that countries are using, it is so important to discuss your decision about organ donation with your family, whether you wish to be an organ donor or not. In the UK, families can override their loved one’s wishes.

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There are also still issues with rejection and there is ongoing research to develop anti-rejection medication to help improve the long term life expectancy of  heart transplant recipients. Existing anti-rejection medications come with a number of problems – they have to be taken for life, cause difficult side effects and cause increased risks of infection and cancer. As many heart transplant recipients will know, it can be a constant battle of balancing anti-rejection medications, with medications to prevent infection and side effects.

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As a heart transplant recipient, I’m forever grateful that I’m living in an era where this procedure has been possible and has enabled me to have extra years with my family and friends. It’s hard to imagine that just over 50 years ago, this procedure wasn’t even possible and amazing to contemplate just how much the whole process of transplantation has developed since then.  Having a transplant has meant I’ve been able to live life to the full and reach many special milestones in my life during the last few years.

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This special anniversary has made me stop and think about all the people who have helped to progress the process of transplantation to where it is today. I shall always be grateful to them. It is thanks to them that I can enjoy my life here and now. I’m always forever grateful to my own surgeon and his team, who performed my transplant and my transplant team who look after me constantly to keep me in optimum health. The whole team continue to strive for improvement to the transplant processes and improving our quality of life through research.

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Recently, Papworth Hospital was the first UK hospital to perform Europe’s first heart transplant from a non-beating heart donor. (DCD Heart transplant programme) Another enormous breakthrough in the process of heart transplantation and a way forward to help increase the number of possible heart transplants being performed. The DCD heart programme is currently being rolled out to all the other heart transplant centres in the UK

It goes without saying, that non of these processes would be possible without our donors and their families, who give the consent to organ donation. I’m grateful to my donor and their family each and every day for the new life they have given me.

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